Category: Caregiving

We had an interesting call yesterday – from a nurse at the oncologists office. She said that the doctor wanted to prescribe Yervoy (Ipilimumab) & Opdivo (Nivolumab). In order to do this, mom would need to apply to the Access to Hope program, which would allow her access to these medications possibly for free. This is the first we have heard of this; however, we have an oncologist appointment tomorrow which will clarify this for us. I am wondering if this might align with clinical trials? The document doesn’t talk about the use of Yervoy in Renal Cell Carcinoma (RCC). I have not yet seen the pathology report (still trying to get my hands on it), so I don’t know if it is clear cell or non-clear cell RCC.

There was some mention of cost of this treatment to be something in the range of $40,000 per treatment. I am finding it interesting how the cost of medications is a consideration in Canada just as it is in the US, as are delays in treatment in order to get approvals for the medications because of the high costs involved. In some ways I’m finding it more complicated here, in part because we have not yet had a conversation with the oncologist about cost of treatments.

The Access to Hope nurse mentioned that the treatment was given every three weeks for four cycles, and then just Opdivo every two weeks until the treatment stops working. A follow up CT scan is given after the four cycles of Yervoy plus Opdivo to see if it is working.

The advantage to getting the medication without a clinical trial is that it can be administered at the local clinic, rather than going to the research centre, which is an hour plus drive away. The disadvantage is that it is an infusion based therapy (it is immunotherapy, which has been very promising in kidney cancer), which means she would need to spend 4-5 hours in the infusion centre for each treatment of the Yervoy + Opdivo, and then 2 hours for the Opdivo alone.

When we first talked to the doctor, he said the treatment would be Sutent (Sunitinib), which is a pill form targeted therapy.

What I am finding here is that the healthcare team does a lot of work in the background. They don’t bring the patient into the conversation until they need to. It is comforting to know that they are looking into multiple options for treatment, but it would be nice if they let me know a little more about what was going on.

We have heard only good things about mom’s oncologist. The nurse that was here to check up on mom yesterday mentioned that she was impressed to hear that he was looking into additional treatments. This too is comforting. We also like that he has appointments in Welland as well as St. Catherine’s, so we can sometimes go to appointments at the local hospital which is only 10 minutes away.

Looking at the various clinical guidelines, for stage 4 kidney cancer that is inoperable (an assumption we are currently making as we have not heard about surgery being an option), that the first line of recommended treatment is “clinical trial”.

In addition to this, mom did the bone scan yesterday. As her primary caregiver, I may have been exposed to enough of the radioactive tracer to set of detectors at the airport – which may make my airport experience on Thursday morning interesting. That being said, the half life is only 3-days, and it wasn’t injected into me – so I likely will be fine. I have the form that explains it, in the event that I need it.

Mom has one more CT scan scheduled – on Wednesday morning before the oncologist appointment Wednesday afternoon. This is the last of the diagnostic images, so we should have a complete picture of the extent of the disease once we get these results.

Today we have no scans or doctors appointments, however, there is a balance and strength exercise class that we are hoping to attend this afternoon. It is twice a week on a drop-in basis, and might work well for mom. She is stronger now than I’ve seen her in a long time. She even stood without a walker or hanging onto anything – which is not something I’ve seen her do in a long time (months if not years). I hope the balance and strength class improves that too.

OK, I know my title is a mixed metaphor – but really the story is just as unexpectedly mixed.

Friday’s infusion was smooth sailing. We arrived at 11:20 for an 11:30 appointment. By 11:25 mom was in the infusion chair with an IV hooked up and the phosphate drip started. The drips took a little longer than planned (over 2 hours), so she was there until 5pm. The chemo centre was quiet and the bod she was in only had one other person for a brief period of time. We were told only one person could wait with mom – which was unfortunate but happened to work out well. My mom’s sister stayed with mom for the first shift, while my aunt and I and went out for a walk and lunch. We discovered an amazing fish and chip place that has a dedicated frier for gluten free – the best fish and chips I’ve had since my celiac diagnosis!

While there, I got a chance to talk to the oncologist’s nurse briefly. I handed over a copy of the power of attorney for medical – which is something they had asked to have on file. I also found out that there are not currently any clinical trials that mom qualifies for. She wasn’t able to give me the pathology report, although I could go through a process at the hospital of filling in forms to get records but that would take two weeks. I’ll follow up with the family doc on Monday. This does make the current path forward clearer. We will prepare for mom to start on Sutent. I also mentioned that I was leaving on Thursday, so they got us an appointment with the oncologist for Wednesday.

We arrived home tired from a long day – but also glad that things went so smoothly. Mom had more energy – possibly from the phosphate boost. She even felt good enough to do some chores.

Then the phone rang – late – after 9pm. It was my sister-in-law. My brother was in the hospital. At the time we didn’t know what was happening, but knew that he would be in the hospital overnight and possibly for several days. Our plans for a relaxing Saturday changed – we planned to drive up to Kitchener (about a 2 hour drive) to visit my brother and get more information on what was happening.

It made for another long day – and a very unexpected one. My brother will be in the hospital for 4-5 days, maybe longer. They also suspended his drivers licence until he has recovered. This is a huge challenge. My brother had planned on spending more time visiting my mother. He loves driving – he drives for a living. It is hard to watch both mom and him – struggling at the same time.

My Aunt mentioned that one of the Hogue coping mechanisms is that of pragmatic planning. After my father died, I saw that my mother also had that coping mechanism. So, I have it from both sides of my family. I cope by getting more information. Trying to figure out what all this means. Trying to make sure that my family is getting the best care they can.

I also remember the first tenet of first aid (and caregiving). You need to take care of yourself, otherwise you are useless in caring for others. I felt a little guilty as I stepped out of the hospital and walked down the street to the gluten-free bakery (a great find) to ensure I had something to eat. I was hungry and wanted to grab lunch. I didn’t want to eat in front of my brother, knowing that he was currently restricted to pureed foods. But I worried that my mother wasn’t eating anything – I ensured we each had a solid breakfast before we left, but still. I also knew that I needed to be in good enough shape to drive the 2 hours to get back home. Self-care is a balancing act.

And so, our Sunday is now hopefully going to be a relaxing day. I have a phone number for the hospital where my brother is, with his privacy code, which will allow me to call in and get information on how he is doing. I thought that was an interesting way of doing things. It allows the ill person to give anyone they want access to information on how they are doing. They recommend only giving the number to one family member, but in this case, I think at least three of us have it. I’m not sure how much information they will actually release over the phone. It being Sunday, I don’t expect to hear much additional information. They are observing him. Hopefully he is stable. Details will likely follow on Monday when the full range of doctors are back in the office.

And so today is a ‘down’ day … at least we hope … the weather got cold again, and we had a few flurries this morning (for those that are reading from California, that means white fluffy stuff falling from the sky, but not really enough to call “snow”). Tomorrow it is expected to get back up to T-shirt weather, and 20 (70) degrees by Tuesday. Crazy spring weather.

 

This week, one of our challenges has been getting a medication for low phosphate. Mom’s blood tests from Monday came back with low phosphate levels. Then we went through the following steps:

1. The doctor sent in a prescription to the pharmacy (which is done by fax).
2. The pharmacist said that the prescription was no longer available (sent a fax back to the doctor and called us).
3. I called the doctor the next day because we had not heard anything (left a message).
4. The pharmacist called us saying they had found something, could order it for the next day, but that it wasn’t covered by insurance and would cost $169. My jaw dropped. That is insane. We said that was too much, they needed to find another solution. So the pharmacist faxed back to the doctor.

We didn’t hear anything the next day, so yesterday I called to figure out what was up. After I finally got someone in the know on the phone, she said they had been working on it since they got the message from the pharmacist, but didn’t want to call us until they had a solution. I am encouraged to know they were working on it, but it would have been really helpful to me if they had called to let us know they were working on it. Meanwhile, we are here wondering what the effects of low phosphate are – we know it isn’t a medical emergency like the hypercalcemia, otherwise they would have sent us to emergency.

When we did get a call with a plan, that plan is for an infusion. The $169 pills might have been an OK solution (we can afford it) if it was a one time deal, but the doctor didn’t know if that was the case. It is a lot of money if it is needed regularly. The plan now is that today, Friday, mom will go into the chemo suite and get a 4-hour infusion of phosphates. Then on Monday, we will do blood work to see if the infusion was effective.

We are entering today with a sense of curiosity – very much like my first experience with chemotherapy. We will get to see what the infusion centre looks like and experience the process. Fortunately, the medication mom is getting is not toxic, and will likely make her feel stronger.

I am struck by the parallels. The foibles in the system are very similar to my experiences in California. The medications may be different, but we still run into issues with insurance – what is covered and what isn’t – and needing to work around the constraints of insurance.

The healthcare team is working to help her. I feel like the team of doctors and nurses are working together to care for mom – however, they aren’t necessarily that great at keep us in the loop. We get directions on what to do, but no insight into the decision making process or the work that is going into making things happen. There are times when it feels like our queries are going into a void – but they aren’t. A day or two or three or four later we discover that someone did hear the question and is working on the answer.

Yesterday we also got a call about clinical trials but we were not home. They only left a message saying they had information, so this morning I will call back and see what is up. Since we’ll actually be there for the infusion, I can ask outstanding questions when we are there. I’m also hoping to get my hands on the pathology report today.

I worry about what will happen when I head back to California next week, but I also see that mom is so much stronger now than she was when I arrived. She also has a lot more people looking in on here. CCAC and the palliative care team are amazing. Mom can call the palliative care NP (nurse practitioner) anytime she has issues with pain. We also know that the NP is talking to the oncologist (she told us she had a conversation with the oncologist) to ensure that the pain meds mom is getting don’t interfere with the chemotherapy. Mom mentioned yesterday that she was surprised how she was not in pain –  but also it made her more aware of just how much pain she has been in over the least few months. Hopefully we can figure something out that keeps her not in pain!

We had our first visit with the oncologist yesterday. He did give us some good news – as far as the CT scans show, there are no signs of bone mets.

There was nothing wrong with the visit. The oncologist was nice enough. He provided the information we were looking for, and he was patient with our questions. I did feel a little like he didn’t like me – like I was the know it all kid in the class that doesn’t really know it all (which I freely admit, I don’t know it all).

I asked about clinical trials and found out that they don’t do any at the local clinic. If we want to do a trial we need to go to Hamilton – and he is happy to make that referral. After a brief discussion with mom and my aunt who is most likely to be doing all the driving, we decided that yes, we want to at least talk to the folks in Hamilton.

The doc said that from the scans it looks like run of the mill kidney cancer. He mentioned the chemotherapy is not recommended with kidney cancer, rather targeted therapy is. The first line treatment will most likely be Sutent (Sunitinib).  He mentioned that approvals needed to be made before it could be started – so it would be about two weeks. Sutent is a targeted therapy taken in pill form. The protocol is two weeks on, one week off. Dosage is adjusted based upon side effects. He said that the medication won’t shrink the tumors but rather slow or stop their growth (if/while it works). The one disadvantage to Sutent is that it doesn’t work as well with steroids, which is what mom is currently taking to relieve her back pain. They have been a miracle drug, so it would suck to have to deal with that.

I asked about immunotherapies, and his comment was that they do that second or third line – after the Sutent doesn’t work. At least that is the approval chain in Canada. To me, this felt like recipe medicine that doesn’t take into account the individual patient characteristics. There were no choices given. There is a possibility, if we can get into a clinical trial, that we start with an immunotherapy rather than a targeted therapy. I really hope we can get into the Hamilton clinic to talk clinical trials later this week or early next week (before starting Sutent).

I didn’t like that I cannot communicate with the doctors electronically. There is no way to see mom’s records. If we want copies of blood test results done at the hospital, we need to ask for them. We cannot just send a question to the nurse or doctor via email. We also need to wait on several things before the next appointment. So they will call us for the appointment after they get the biopsy results and approval for the Sutent – so they may know the biopsy results for a few days or even a week before we get to hear what they say.

I certainly feel the passivity in the medical system here. It is still very much paternalistic. The doctors withhold information until it is convenient for them to provide it. This doesn’t allow me to be prepared for the appointment – so I don’t necessary ask any tough questions. I hate that I cannot review the results myself before the appointment. I hate that I cannot self-refer to the Hamilton centre – rather we need to wait for the doctor here to make the referral. ugg.

We asked the doctor about surgery. He said he would review the case with his peers during the video chart review (they call it some kind of ’rounds’ here). They will see if mom is a candidate for surgery. Mom was OK with the idea of it, so I really hope she is a candidate. The onc said that if surgery was indicated she would be referred to surgeons in Hamilton where they have kidney cancer surgeon specialists. That was comforting. From what I’m reading, there are significant benefits to surgery for most types of metastatic kidney cancer – so I really hope that turns out to be the case.

If I am interpreting things correctly, if surgery is an option that would happen first – hopefully within the next couple of weeks. Then once she has sufficiently recovered, they would start on some kind of therapy – targeted such as Sutant or a clinical trial.

Once treatment starts, blood counts will be followed closely at first. Then follow up scans would be done in three months – as long as nothing changes or there are no new symptoms, Sutent is the continued path of treatment. Of course, if mom gets into a clinical trial, all that changes, and all this assumes that the pathology comes back with ‘run of the mill’ kidney cancer.

For the rest of the week we will be dealing with all the other logistics associated with mom’s illness. We have various home care assessments, and we are still trying to figure out optimal pain management.

It was odd being the one in the chair meant for family members – rather than being the one in the hospital bed. Looking at my mother, I could vividly recall the feeling of warm blankets being stacked on my cold body as I awoke after my various procedures. The smells in the hospital also brought back memories. Memories of the many times that I have been the patient over the last four years. But this time, it isn’t me that is getting the biopsy. It isn’t me that is dealing with a new diagnosis of cancer – it is my mother.

Similar to my diagnosis, this came out of the blue. We did not expect it. And even when things were looking like it might be cancer, it certainly wasn’t kidney cancer. From what I’ve read, most kidney cancer is diagnosed as an incidental finding on an abdominal scan that is done for some other reason.

Mom’s biopsy didn’t quite go as planned. We arrived to find out that it was booked as ultrasound-guided – we were originally told it was to be CT guided. The first problem was that when mom went back, her blood pressure was too low. I have no idea what they did for it. But it caused a delay. Then when they tried with the ultra sound, they couldn’t get good images of the tumor, so they put her in line to do the biopsy via CT. Fortunately, this did not require rebooking. It delayed things by another 90 minutes, but she was able to get the biopsy done which was really important. After the biopsy she had to wait on bed rest for 3 hours before she could come home. It meant for a long day – starting at 10:30 and not ending until 5pm. It was a good thing we didn’t have anything else planned for the day.

Now we wait – we will see the oncologist for the first time on Monday, but we won’t have any new results that soon. I don’t know when the results will be in, but sometime within a week. Treatment cannot start until we know exactly what we are dealing with. For now, I’m happy that mom’s pain is mostly under control and she is doing a lot better. The pain meds have a benefit of having helped her appetite return, which in turn is helping with her energy levels.

It is amazing the difference good pain control makes. Mom is now on a steroid and made an amazing transition. She went from being in unbearable pain to being able to move around a lot more steady on her feet and with a lot more energy. It is like she is suddenly a different person – or at least the person she was the last time I visited her. It is so nice to see her back to herself again.

The unfortunate aspect of this is that it is yet another sign that the cancer is in her bones – she also had hypercalcemia (too much calcium in her blood), which is also a sign of bone mets. We know the cancer is in her kidney and lungs, so being in the bones is not a huge surprise. The pain doctor said she would write a letter to the oncologist, which should help us get to the testing for bone mets sooner rather than later. I will follow up on that with the oncologist on Monday.

One of the things that was recommended was that we get a transport chair – a lightweight wheel chair that has small wheels. The transport chair allows whoever is bringing mom to push her in a wheelchair rather than mom using the walker. It also makes it a lot easier for mom to get in and out of the car. So we are very happy for it. She even went shopping yesterday with her sister – and between the transport chair and the electric carts at the larger stores they were able to do a bunch of shopping / chores. The transport chair will make it a lot easier to get to/from doctors appointments.

Love it, hate it, love it. That is an expression that a friend told me about being the family expert on cancer. Because I’ve been through it, I’m the one that understanding what is happening. I’m the one that knows what questions to ask, and which doctor to ask. I’m also the one that can interpret some of the symptoms. I love that I am able to help, but hate the reason I’m able to help.

I am thankful that I have such great friends with metastatic disease. Friends that are not afraid to talk about their experiences with the disease, but also not afraid to talk about death. They have given me the practice I need to have those conversations – but not yet – it is too early to have those conversations. Right now I’m in full-blown caregiver mode.

I never thought of myself as a caregiver. My husband is the caregiver in the family. He was my rock throughout my treatment (throughout my life now really). I am surprising myself at that way I’m thinking now.

Those that know me from support group know that food is how I show love. I cook. I make healthy meals and bone broth – and chocolate – although I don’t have the stuff I need here to make chocolate. I might need to figure that one out at some point.

One interesting thing is that I see the echo of my initial experience in not wanting to do too much research on kidney cancer. At this point, without biopsy results there is just too much information. Unlike breast cancer, which really had three variables (ER, PR, and HER2), kidney cancer has a lot more. Those variables affect the types of treatment. I’m encouraged that targeted therapies are available for many types, and they are effective at improving quality of life for a time frame.

I did find this website Kidney Cancer Canada, which has some good information for newly diagnosed. For now, we are in that wait mode that feels like forever.

We did have a brief visit from the pain doc (actually the palliative nurse practitioner). What she prescribed last night did not work at all, but she has a different thing that we will try. I hope to get the prescription this morning. If it works, we’ll go out and do some shopping – mom has not been out to do her usual running around over the last week (feels like much longer than a week). I really hope we find something that reduces the pain!

Yesterday we had the first home visit from the nurse. When I set it up, I was led to believe that the nurse could immediate help with pain management. Unfortunately, that wasn’t the case. The first visit was mostly paperwork. The nurse did put in a referral to the pain doctor – who is expected to do a home visit on Monday or Tuesday.

I realized that I need to be more proactive in ensuring that mom is taking regular pain medication. Since she doesn’t want to take Tylenol 3 (leads to constipation), we are trying different options of over-the-counter pain meds. I think we might have something that takes the edge off, at least until we get the stronger meds from the pain doctor. I just need to be vigilant about getting pain meds into her every 6 hours – at least until she is feeling well enough to manage that on her own.

This week most of our appointments are at the house – something that I am thankful for. The weather is frightful. We missed the first pass of freezing rain that hit Toronto, but we did not miss the second pass. We got ice pellets last night and they are still falling from the sky. I’m glad that I bought enough food to keep us for at least today, so no one needs to go out and drive in this.

Friday is a big day for appointments. We will get an orientation to the cancer centre in the morning and then they will biopsy the kidney tumour in the afternoon.

The waiting is the worst really, although the waiting doesn’t feel as stressful for me this time – maybe because it isn’t me that is sick, or maybe it is because I’ve gone through this with my own cancer, that I just know what to expect. I’ve talked many women through this time of waiting.

My other focus is food. I’m cooking. I’m trying to make sure that mom is eating and getting some nutrition from real food. I need to figure out how to get more fibre in the food, but that is especially a challenge with gluten-free food. The gluten-free foods that I cook tend to be high in protein, but the proteins are not necessarily high in fibre. Maybe I’ll look at something with beans.

For those just joining me – I’m not talking about me in this post – rather I’m talking about what I am hearing regarding my mother’s health. Today we had an appointment with the urologist. He is the doctor that told my mother she had cancer. I wanted an appointment so that he could go over everything again while I was there – but also to answer a few questions. When you first hear the words “you have cancer” you don’t necessarily hear much afterwards, so I wanted to have the doctor go over it all again.

I didn’t quite like the way the doctor worded it – mostly in the presentation of RCC (Renal cell carcinoma) as grave. I didn’t like that. He said, we hope for the best but prepare for the worst. Yes, stage 4 RCC is terminal, but death is not imminent. If the treatments work, then there is a chance for some good quality living before death.

The doctor said that there were two broad types of cancer that will be determined from the biopsy – lymphoma or renal cell carcinoma. The chance of lymphoma is quite low – like 5% – and he thought that was the better of the outcomes because the lymphoma is treatable/curable (again, a choice of words that I don’t completely comprehend as the sense of curable doesn’t align with breast cancer – but it might with other cancers – being cancer free or in remission is not ‘cured’ IMHO). Anyways, if it is renal cell carcinoma then it is stage 4 and it is terminal.

One question I had was why a biopsy rather than removing the kidney? His comment was in part because there were tumors in the lungs, which means if it is RCC it is stage 4 and if it is lymphoma they treat that with chemo – so in either case, surgery is not the first choice of treatment.

 

I could tell he was not an oncologist, because he used the term chemo when talking about treatment that the oncologist would give. In all the reading I’ve done, it says that chemotherapy is not effective for kidney cancer (unless it is a rare sarcoma), but rather there are very effective immunotherapies and targeted therapies. These are often given via infusion, so people get them confused a lot – and it is often easier to just call everything chemotherapy – but they really aren’t the same thing so I really want for the doctors to be using the right terms.

The other thing I did today was to call the Community Care Access Center (CCAC). These same folks were an immense help when my dad was sick. Back then we wished we had called them sooner, so this time I was not going to wait. I had a great conversation with the intake team and they are sending a nurse over tomorrow to help assess mom’s pain levels and make recommendations to her primary care doctor for pain management. I think that when she is in less pain she will have a lot more energy. I remember just how draining pain can be!

I also asked how long it will take to get the biopsy results. The doctor said about 1 week. With the biopsy late on a Friday, we will probably end up with an oncology follow up the Monday a week later. I also asked what type of biopsy, and he said fine needle – seems like it is going to be CT guided. They will do some freezing but no anaesthesia.

We will have an initial oncology appointment next Monday – but they won’t have the biopsy results that quickly. The initial appointment will be a chance to get a better sense of what we are dealing with and what the treatment options might be given the different options. If nothing else, it is a chance to meet with the oncologist and get a little more familiar with the oncology setting.

It feels like I’ve been here for weeks – and yet it has only been two days. I’m tired – but that is in part jet lag, but also partly just tired.